Sunday, April 27, 2014

And there it goes-lung function dropping...

We returned to Madison, Wi this past Monday for a routine follow up.  After my local visit with my pulmononolgist in late March where my lung function was 22%, my doc called Wisconsin to alert them and to discuss returning back to the active portion of the transplant list.  They called and wanted me sooner than April 21 but due to extenuating circumstances I wasn't able to get there sooner. They asked if I could wait to discuss the transplant list and I felt I could.
Monday's visit included labs, breathing tests, blood gases, 6min oximetry, and clinic visits.  My spirometry revealed a lung function of 19%.  I didn't walk as far during my 6minute walk but still walked further than most with severe lung disease.
During our clinic visits, we met with a pharmacist who reviewed all the many post-transplant meds I would be on and the enormous side effects that come along with the meds.  Its mind boggling.  The transplant coordinator came in and reviewed the protocol on being on the list and the need to get there in a timely fashion.  The transplant doctor came in and after seeing my numbers suggested I go back on the active portion of the list.  He stated that overall currently there is a shorter waiting list and a short A+ (my blood type) list, meaning that I may get a call sooner than the average 9-12mos.
He also suggested that I may need to stop working, I see sick patients and being on the list its important to stay as healthy as possible and as strong as possible. That is a hard pill to swallow, but something I will contemplate. I'm not looking forward to having the phone on me 24/7 or the tremendous battle before me.
Another glitch is my husband just started a new job last wk and our insurance will be changing to Blue Cross Blue Shield. I need this to be a seamless switch, pls pray that it is.  Benefits started on Day 1 which is great but not sure how BCBS is to deal with. I've had Priority Health for the past 16yrs and I know what to expect-I'm sure they are breathing a huge sigh of relief seeing me go.

Pray for perfectly matched lungs, seamless insurance switch, and the wait to be short.

So for now I must:

Thursday, April 3, 2014

April is National Donate Life Month! And other thoughts

Sign up! Sign up! Sign up! for Michigan residents or for anywhere else. I never got a comment for why one decides not to become an organ donor in a previous post.  Your body won't be hacked up, you will still be able to have a viewing, medical personnel will do everything to save you, but the best part ---you will live on in someone else that would ultimately DIE without that gift of life.

If you asked me 5yrs ago if I ever thought in my wildest dreams that I would be where I am today healthwise, you would have heard a resounding NO.  Heck, I'd been through enough as a child, now I need a transplant ?!?!?! It is very surreal at times and with my recent lung function dropping again to 22% a few wks ago the reality of a transplant is creeping closer and closer.  This year could be a game changer for me--SCARY!!!!! You can't really understand until it affects you personally-there is so much involved.  Do I want to be here? NO! Do I want to stop and catch my breath if I walk too fast? NO! Do I want to die at 38? NO! Do I want to lock myself in a closet and scream and break things and hit someone in the face as hard as I can? SOMETIMES! Do I want to curl up in a ball and stay in my bed somedays? YES!
Ah, the unending roller coaster of emotions one experiences when life decides to pull the rug out from under you. Life goes on with or without you, so I will fight to keep up with the demands of life.

I go to Wisconsin in a few wks, they want to see me before putting me back on the active part of the list.  I'm pretty sure they want to make sure I can still travel there and don't look like death warmed over with this barely working lungs.  The time has come, the time has come, it is done.
Here's a great song that sums up how I'm feeling-the first line says it all.